With concern growing about people with learning disabilities and autism being admitted to ‘long-stay’ hospitals, how can we help them rebuild their lives?
In recent years, there has been growing concern about the number of people with learning disabilities and/or autistic people being admitted to secure hospitals for extended periods of many years with no planned date for them to leave. Although the UK decided to close its asylums from the 1960s onwards, there has since been a period of ‘re-institutionalisation’ which seems to have crept up on us almost by accident, without anybody really realising the scale of the problem.
Around 2,000 people still live like this in England, despite repeated policies to help people leave hospital and live in the community. This is a real problem as these services struggle to help people to lead ordinary lives, can be a long way from people’s homes and families, are very expensive and have seen several horrific abuse scandals – just as was the case with the asylums of the 1960s.
There has been surprisingly little research on why people get stuck in such settings. Previous research has often failed to talk directly to people with learning disabilities/autistic people, their families and front-line staff about their experiences of living or working in such settings, what they see as the main barriers and what would help more people to leave hospital.
Despite this, there has been surprisingly little research on why people get stuck in such settings. Previous research has often failed to talk directly to people with learning disabilities/autistic people, their families and front-line staff about their experiences of living or working in such settings, what they see as the main barriers and what would help more people to leave hospital. Without drawing on this lived experience and practice knowledge, we argue, we’re unlikely to come up with solutions that work for people.
In contrast, our research, which was carried out with the rights-based organisation Changing Our Lives, talked direct to people with learning disabilities and/or autistic people in three long-stay hospitals. This wasn’t always easy – getting access to secure settings can be difficult, some people don’t communicate verbally, some people have committed very serious crimes and lots of people are very scared, angry and traumatised. Where we had permission, we also talked to people’s families and a series of different health and social care staff, as well as reading people’s case files and observing multi-disciplinary meetings. Where possible, we also followed up with people 12 months later to see what, if anything, had changed for them. All too often, little had.
These experiences are captured as ‘ten top tips’ in a policy guide sent to every health and social care leader in the country. They are also set out in a free training video for care staff and in accessible versions for people with learning disabilities. We have also worked with the Ikon gallery and Birmingham-based artist, Foka Wolf, to host an exhibition and billboard campaign – further amplifying voices that are seldom heard.
People with learning disabilities and/or autistic people in long-stay hospital know what kind of life they want to lead; they know that no one should ‘live’ in a hospital and they often know what would help them leave – the problem is that not enough people seem to be listening.
This research was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research (HSDR) programme (project reference NIHR130298). However, the views expressed here and in materials from the project are those of the research team and people who took part in the research – they do not necessarily represent the views of the NIHR or the Department of Health and Social Care.
For individual stories of people who have come out of hospital, and who are now living more ordinary lives – please see the ‘Hospital to Home books produced by Changing Our Lives.
Professor of Health and Social Care
Jon Glasby, Professor of Health and Social Care. Areas of work include inter-agency health and social care, direct payments and individual budgets and community care.
